Mapping the Patient Information Journey

Patients need appropriate information tailored to their specific needs at each step of the care pathway. This should begin on the day of diagnosis and continue on through treatment and long term self-management. Your healthcare journey is a continuum and your information needs change as you move along the patient pathway. When you are first diagnosed, you will have many questions, fears, and concerns. Having answers to your questions can help you understand your diagnosis better and feel more in control about your treatment decisions. How much information you want is up to you. Some patients feel overwhelmed by too much information at this stage. Others say they didn’t receive enough information. While information upon first diagnosis is vitally important, we may be in shock and in a heightened emotional state which makes it difficult to fully comprehend all the information we receive at the beginning.

Several years ago, when I raised the question on my blog of whether you can have too much information, Dr Deana Attai, Assistant Clinical Professor of Surgery at UCLA Health, pointed out that “it can be difficult to navigate all the information and options that are available”. Dr Attai recommends you “take your time, get organized, and if possible, bring a trusted friend or family member to appointments with you. If that is not an option, ask if you can record the consultation – that way you can focus just on listening, and go back and review the whole conversation later. Slowly sort through the information, do some research, and ask more questions if needed before you make a decision on treatment.”

Patients make the best decisions when armed with the right information. Research has shown that access to the right information at the right time delivered in the right way leads to an increase in a patient’s desire and ability to have a more active role in decision-making. Shared decision-making (SDM) is the conversation that happens between a patient and physician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. Decision aids that are based on research evidence are designed to show information about different options and help patients reach an informed choice. There are a number of tools available to support the SDM process such as information sheets, DVDs, interactive websites, cates plots or options grids. A 2012 Cochrane review found that patients who use decision aids improve their knowledge of their treatment options, have more accurate expectations of the potential benefits and risks, reach choices that accord with their values, and more actively participate in decision making. It’s important that the information you receive is tailored to your age and specific needs. When I was diagnosed with breast cancer, the information I was given wasn’t tailored to my needs as a young woman with breast cancer. The information was aimed at a much older patient demographic and didn’t reflect the impact that breast cancer would have on me as a young woman living with the disease.

As you move along the patient journey and better understand your illness, you may want higher levels of information. However, you may find the information healthcare professionals provide has not keep pace with your increased needs. This is the point where many patients turn online to seek more information. While the Internet can be a useful source of health information, it’s important to know how to critically evaluate the information you find online. This previous article, How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News has many helpful tips and resources to guide you. Always discuss what you find online with your doctor and ask them to put the information into context for your particular situation.

Increasingly patients are turning to their peers online, using social media to seek out the experiences of other patients to help guide their healthcare decision making. Reading information in a brochure doesn’t compare to the ability to interact and ask questions in a social networking site. US Department of Health and Human Services Chief Technology Officer, Susannah Fox, has labelled this trend as “peer-to-peer health care”. She observed how “people living with chronic diseases (and their caregivers) are especially likely to say they look online for peer advice. They are pioneering new ways of pursuing health by banding together and sharing knowledge”. This model of seeking and sharing information online has given rise to a new breed of expert patient – the ePatient. Dr Tom Ferguson who coined the term used it to describe patients who are “smart, motivated and experienced with an impressive and up-to-date knowledge of the best resources, centres, treatments, research, and specialists for their conditions.”

Once the initial diagnosis stage has passed, and you are moving through and beyond treatment, your information needs will also include every-day coping tips and long-term strategies to manage your care. This is where peer-to-peer support is particularly helpful. Research conducted by the Pew Research Center shows that one in five Internet users have gone online to find others who might have health concerns similar to theirs. That percentage is even higher – one in four – among those living with chronic disease, or caring for someone with a disease. Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But the number of patients saying they turn to their friends, family and other patients for day-to-day advice, and emotional support is higher. Dr Ferguson observed “when it comes to aspects of illness that some clinicians may consider secondary – such as practical coping tips or the psychological and social aspects of living with the condition – some experienced (ePatients) can provide other patients with particularly helpful advice.”

Apart from social networks hosted by patient advocacy groups, medical facilities, and health sites, patients are blogging about their experiences, sharing stories of coping with diagnoses and dealing with their diseases on a daily basis. On Facebook, which continues to be the number one social networking site, groups can be private or public places where users share coping tips, ask questions and find a sense of connection. While Facebook groups and pages are useful resources for patients, Twitter takes the healthcare conversation to another level. Here you have a greater mix of patients, physicians, healthcare professionals, and medical researchers, all coming together in one virtual space to discuss healthcare matters. Use #hashtags to search for health-related information and join Twitter chats related to your health condition. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. I use Twitter as my personal learning network, a real time information resource in which I am globally connected with patient peers and health professionals.

It has been over a decade since I was first diagnosed with breast cancer. Today as I look back on how far the journey has taken me, I can chart my progress towards becoming a patient advocate through the quality of the information I received along the way. My progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches and patient peers online. Now I have become the person sharing my experience to help others along the pathway. And I am not alone. By sharing your journey too, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis or learning how to cope with an illness, its treatment, and long-term care. As advocates, I believe it’s part of our job to make sure that all patients receive timely, accurate and understandable information to help guide decision-making. We have a wealth of hard-won wisdom and information to share, so let’s share generously with others who are just starting out on their own patient journeys.

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.